As told by Na’Via Cooke
When you’ve met one child with Autism, you’ve met one child with Autism. Each is as different and as beautiful as a single snowflake. The rate of Autism diagnosis increases each year according to the Center for Disease Control (CDC). The rate is now 1 in 54 children. Just a few short years ago it was as much as 1 in 81. No ethnicity or socioeconomic group is immune. Boys are four times more likely to be diagnosed than girls. Black and brown children are diagnosed later in life. But that’s another article. Autism Spectrum Disorder is known as a complex neurological disorder that can affect the entire body in one way or another. It can be identified by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Some people need lots of support while others need very little. My career as an educator includes teaching students who live with Autism (I prefer not to say Autistic). But that is nothing compared to raising a child living with Autism.
My daughter was diagnosed with Autism at the age of 4 ½ years old. She seemed to have normal development for a while. Hitting milestones as a baby but slowly we started to recognize some things just weren’t typical about her. She had an extremely rigid diet, was not speaking, sensitive to some forms of physical touch such as patting her on her head, and preferred specific particular activities. At the time I was teaching students with Autism but it took colleagues and ultimately my mother to help me recognize it in my own child.
I’ve told this story a few times. Na’Via is now 12 and is learning to navigate life on her own terms with so many amazing members of her support system right beside her. It’s time she told the story in her own words.
Me: Hi, Na’Via.
Me: How are you feeling today?
Na’Via: Actually, I’m a bit bored.
Me: Why are you bored?
Na’Via: I miss school.
Me: You miss your friends and teachers?
Na’Via: I just miss going to school. Some lunches are bad. But I miss seeing some friends and my teachers and doing fun activities.
Me: What’s your favorite class?
Na’Via: My favorite class is art. It’s nice and the teacher is amazing.
Me: Do you know what’s special about this month?
Na’Via: (singing) Autism Awareness!
Me: What do you know about Autism?
Na’Via: It’s a special thing or feeling inside that makes you feel different than others and how they see you.
Me: Do you remember the first time you knew you had Autism?
Na’Via: I was at this doctor’s office. I didn’t know what they meant but now I do.
Me: What do you understand about it now?
Na’Via: To be quite honest, I don’t know how to say it. I just know it’s a feeling that makes you think different. And do things different. And people see us different.
Me: When you say people see you differently, what does that look and feel like?
Na’Via: People who may see you sometimes don’t know what to do. Some know what to do. Some don’t know what to do. Some of those people get frightened.
Me: What is your life like with Autism?
Na’Via: There is only one thing I can think of that I do because of Autism. I have to fix the bed sheets. It annoys me a lot. I hate it when they come off (the corners of the bed).
Me: What about when you aren’t home? Like in the stores or at places like school or church.
Na’Via: In stores when I walk around I have to get away from noises that are too loud.
Me: Is there a person you can think of that you count on to be there for you in situations like that?
Na’Via: You, of course, but Victoria (her big sister) can be annoying and a bit of a brat but she helps me. Basically, all of my family I can truly count on.
Me: Can you think of a time that was really hard for you? Maybe when someone didn’t help you?
Na’Via: I remember in preschool there was a teacher who didn’t like me. She didn’t like how I was doing things. I had to go to the office and wait for you. I felt sad. I think she didn’t respect me because I had Autism.
Me: Anything comes to mind now that you are older?
Na’Via: What do you mean? You are going to have to be more specific.
Me: I mean have you experienced people treating you differently lately? Like in the last few months? Or this year?
Na’Via: At school some kids don’t like being with me. They chose other groups. I have to work alone. I don’t mind doing that but if there is an option to work with someone I’d like to work with someone I know pretty well.
Me: If you could speak to the world and give advice on how to act when they know someone with Autism, what would you say?
Na’Via: Treat all people with respect, niceness and kindness. Never treat them with unfairness or disrespect.
Me: That’s great advice. What do you want to be when you grow up?
Na’Via: I don’t know what I want to be.
Me: I think you should be a teacher.
Na’Via: Of course you do because that’s our job. I might want to work at Chick Fil A or be a softball coach. Or work in technology like Dad.
Me: I understand. You have plenty of time to think about it. Any last words for anyone reading this?
Na’Via: I guess there is a little bit of last words, treat people that are diagnosed with something nice and kind. Not just Autism, ADHD, people with other symptoms even if it’s low or high functioning.
Me: You are amazing. I’m glad I get to be your mother.
Na’Via: Awww, thank you.
I don’t even have the words to conclude this. She truly is my blessing. I have learned to practice humility and acceptance 24/7 because of her. Raising her helps me be a better teacher of students with Autism. I advocate for their acceptance in society everyday. The world needs to accept Na’Via and others, as they are preparing to be a part of it. Colleges are catching on. Businesses who know the value a person with Autism brings to a team are preparing as well.
Na’Via will be ready for both. She now advocates for what she needs and is very good at it. This year she will attend her first IEP meeting. She also wants to go back to Camp Royall’s summer camps. Even though we have rough patches and I am learning the difference between her testing the waters as a pre-teen or she is just being honest when she tells me I can’t really cook as well as I think, she is thriving. And I wouldn’t change a thing.
Support for Families Living with Autism:
NaShonda just recently finished her 20th year teaching in North Carolina Public Schools. Arriving by way of Pennsylvania, she enjoys working with students of all ages and abilities. She’s been featured in TIME magazine for her continued advocacy to improve public education. She lives in Wake County.